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#189206 - 11/10/10 07:17 PM Re: Sticky wanted on Diet [Re: Tacitus]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
John, you said -"I don't know about McArdles, sorry--but there are easily over 200 sequelae of AS and these observations can also have multiple names."

I confess....I had to look up the word 'sequelae'! However, I think that AS is the result of the other diseases - as an end stag of them. I think AS will become obsolite as a name simply because noone will develope that damage long enough to be able to identify it,
as the identification is reliant on a positive MRI of the hip.
I am wondering if the lack of the enzymes reliant on those vitamins are the starting point [certain Genes]
This is the kind of research that researchers will be involved in with AS.
http://jnnp.bmj.com/content/81/2/231.abstract
Quote-"Methods Nineteen consecutive LSM patients collected during 1995&#8211;2007 in our

Neuromuscular Laboratory who were dramatically responsive to riboflavin and presented

with proximal muscle weakness, exercise intolerance and elevated serum CK but without

episodic encephalopathy were subjected to pathological, biochemical and molecular

analysis."

It might not be exactly this glitch but something similar I am suggesting things to do with NAD or Pyodoxal [Genetic] sites.

I suspect McArdles is a cause - not a result of AS.
Research needed.
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#190887 - 12/02/10 12:56 AM Re: Sticky wanted on Diet FINDING A CURE? [Re: Tacitus]
nightofstars Offline
Registered Visitor

Registered: 03/07/09
Posts: 23
Michael Cranman claims to have cured his own ankylosing spondylitis, by diet, at this website, and I was wondering if anyone has any experience trying the things he has published? He wants $79 for the book and an audio mp3 book.

Here's the website:

http://ankylosingspondylitisdiet.com/
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#190888 - 12/02/10 01:06 AM Re: Sticky wanted on Diet [Re: Twynducky2]
nightofstars Offline
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Registered: 03/07/09
Posts: 23
This story makes me so sad you tell, because it is mine exactly, all of it. I was told to get counseling for 'anxiety.' For about 10 years I suffered until I became totally paralyzed working seafood lines in Bristol Bay, Alaska. Then the HLA-B27 was tested positive. Wrists, facial bones, ribs front and back, mid-to-lower spine, tailbone, sacroiliac joints, all of it hurts like those blazing red heater coils in those expensive olden day plug-in heaters and I end up in the emergency room paralyzed unable to hold myself up or walk. It's disgusting. It makes me think it is over for me and I don't have very long to live. It has caused damage in the body, xrays show significant damage from mid-spine to tailbone and sacroiliitis in my sacroiliac joints.

I am going to try some hints at some pain triggers that are in the book, "Alkalize or Die" and get on a diet that stops acidity (celery, lots of it, has an alkalizing effect on the body), NO CAFFEINE, I can flare within 2-3 days of drinking one 2 shot white coffee per day for 2-3 days, and it gets ugly in the spine then. And, there is a new thing I found that has given some hope and energy I get at www.afforable-essiac-tea.com, called Essiac Tea from a Chippawa man that has passed but it is still made available. That with an alkaline diet may help you. I have trouble being consistent but it is taking away my ability to walk for good so I am looking for strength to give just about everything up. I can't walk in a couple days of eating raw broccoli, raw almonds, horsetail, silica, these things are disabling triggers. Please try to remain strong and get consistent onto something so you can see if trials prove useful to your overall life, like I'm going to try to do. Discipline can be so hard when you cook for everyone in the house and they expect what they consider "normal." It isn't normal to you though, it is really bad on our system, damaging.
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#190889 - 12/02/10 01:10 AM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
nightofstars Offline
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Registered: 03/07/09
Posts: 23
I think some of us need a really thorough education on just what are starchy foods, because in one ankylosing spondylitis book on starches, it says even zucchini squash, something like that, has starch in it, and bananas! That is not just breads, potatoes, pasta, things like that. If anyone knows a really thorough starches education place, please let us know.

Thank you.
_________________________
UNIVERSAL DIVINE POWER: PLEASE FIND US A CURE.

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#191174 - 12/04/10 05:31 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: nightofstars]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hello, nightofstars:


The definitive book was written by Carol Sinclair: The New IBS Low-Starch Diet. Although she calls it "Low Starch" it is what I call NSD; No Starch Diet; Ebringer wrote the foreword and was splitting hairs "You cannot remove ALL starches" (lol)Ok well it is as low as one can get while still eating!

She has been on her diet with no ill effects for nearly two decades and although her father was very hunched over from AS, she does not even have fused SIJ (she is B27 positive) yet, thanks to her diet. Regret her book is available only in UK.

Despite severe osteoporosis, I am doing very well and planning another extended trip to Philippines, so take heart; there is hope. Years ago, I was doing Edgar Cayce diets (alkalizing diets) and they did not cure me--but I have Glyco-Thymoline to immediately alkalize myself whenever a cold or flu is coming on and it really works wonders.

HEALTH,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#191331 - 12/06/10 07:12 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
John, again I have to say - shame on you.

You know you cannot make a statement like:

Quote:
she does not even have fused SIJ (she is B27 positive) yet, thanks to her diet


There is NO way to assign causality between those two variables.

Further, who cares? SIJ fusion has nothing to do with disease severity or prediction of later outcomes.

Furthermore, her father's hunched-over-ness has nothing to do with her own status or prognosis either, diet notwithstanding.

If you stick to FACTS people might possibly consider you TRUSTWORTHY.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#191341 - 12/06/10 09:02 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: JenInCincy]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Jen, let me clarify something for You:

These are HER words; not my own. Several people have made this observation not only about her (she was not at the AS Clinic, btw) but about others who were part of Ebringer's patient groups.

She made this statement and I not only happen to believe her--both unashamedly and enthusiastically; my own RESULTS and my own observations support this claim. And here is the FACT: I stand by my support of Ebringer, Campbell, Cayce, Sinclair, LeTissier, Seignalet, and Mercola. If I am in untrustworthy company, I will stick with these who got and still get RESULTS.

I have seen plenty of "scientific" papers written with much more "ambitious" conclusions.

So, I do not temper or modify my statements and if it does not matter (apparently it does not and frankly I do not agree that SIJ damage has nothing to do with disease severity--whether You can find phonied-up pseudo technical papers to prove such a ridiculous claim what is shameful is that YOU would actually believe such nonsense) then it is more hair-splitting anyway--right? Your unique spotlight of truth should be turned around on occasion.

Regards,
John

_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#193459 - 01/02/11 05:03 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
John, I am intrigued with your comment in your life story, about having a mentally ill brother.
I have a relative with a similar problem. There is a strong association with the group of nutrients Manganese, zinc, magnesium, B6, NAC, B2 , carnitine and others I am not sure of. It is a disease of city living - assumed to be environmental [accentuated by nutritional deficiency, and I agree].
Diet plays such a role in our AS and also that illness is dietry [yours and my experience plus someothers]
Particular Fats are a problem for me. They crucify the brain. My memory is bad.
Have you identified with a particular genetic group? Do we have ? in common?
I really want to find my roots.

THE DIET IS THE KEY
_________________________
North
PreAS = STARCHfree, yoghurt, ,, meat , vitE, niacinamide,B complex
CARNITINE, B6
Fibro = antiviral, MAGNESIUM /B6
Arthritis in fingers = no potato fam. plants
***********************************
Candour & laws differ from place to place

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#193540 - 01/03/11 02:36 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: north]
Tacitus Online
Registered Visitor

Registered: 06/06/03
Posts: 2860
Loc: Reno/San Fernando LU PI
Hey, North:

Well, I am nearly certain my brother's condition is related to FAS (Fetal Alcoholic Syndrome) due to our mother's increasing use of whiskey and there must also be something to her smoking (I call them 'monoxide brains') while he was in the womb. There is a link between smoking and Crohn's and I am certain this exacerbated her undiagnosed AS, but absolutely led to her death at age 42 from aortitis and inflammatory cascade causing stroke.

As far as I know, I am only Irish, English, and Scots; a rather too narrow mix, I suppose.

My brother's P-S could be articulated around age 8, but certainly he had an "acute strangeness" since birth.

I suppose there are some things that city dwellers are more prone to. As a child I had terrible allergies and when I went to cousin's farm I nearly died haying a field once!

HEALTH,
John



_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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#194650 - 01/13/11 03:52 PM Re: Sticky wanted on Diet WHAT ARE STARCHY FOODS? [Re: Tacitus]
north Offline
Registered Visitor

Registered: 01/25/06
Posts: 1176
Loc: N Z
john - you said" As far as I know, I am only Irish, English, and Scots; a rather too narrow mix, I suppose."

hmmm, mine is English, Scots with the B6 problem stemming from a germanic tribe genetic 'glitch' ;-) The alcoholism makes it difficult to see a connection - a red herring. i think it is in the genes.
I see a lot of these arthritic type diseases in those here of Scots or northern European discent.
I suspect that a lot of it is in the lack of pyridoxine B6] which seems to lay the base for everything else to decline. It is very common.
In my experience it is the lack of B6. Certainly it is true in my case Adding the B6, is changing everything. My sensitivity to starch is declining. I think it is the base cause of AS. It is in a great many enzymes.
If your folks had had adequate B6 and niacinamide [= less appetite for the drink] maybe the outlook might have been very different.
???
Schizophrenia is less common in the countryside. I suspect that the more highly processed foods of the city deny B6, and the manganese and zinc.


Edited by north (01/13/11 03:57 PM)
Edit Reason: more info

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